After my last post, I pondered more about my own knowledge of Autism. And initially, I felt proud that I know a lot about Autism. But that’s incorrect. I know a lot about how Autism affects my son. I understand what Autism means to my family and me. So, I took my own recommendation and did the homework assignment to read about Autism Acceptance.

I clicked on an organization, which I am familiar with, ASAN-Autism Self Advocacy Network their mission: “ASAN believes that the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens”.

What I was struggling to say in my last post about acceptance, they define beautifully, and I probably should have looked at this prior to sending out my own definition, but alas I jumped the gun.

“Awareness is all about creating a sense of urgency and fear…. Awareness is easy. Acceptance requires actual work. Acceptance comes from a place of understanding… Understanding takes work. Acceptance seeks to meet us where we are, or at least far closer to equitably than awareness does… Awareness says the tragedy is that we exist as we are. Acceptance says that the tragedy would be trying to make us any other way.”

Read that passage again. I’ve read it four times and it gives me chills-kudos to ASAN for nailing it. Acceptance requires actual work. So, that reaffirms to me, we still have a lot to do.

As I read on, I came to a section called “Identity First Language”. For those of you who aren’t familiar with this, it is a raging (and I am not exaggerating that term) debate in the world of Autism. I don’t want to start any riots; I merely want to expose you to the term and to make you aware of the sensitivities to this topic and hopefully take your knowledge and Acceptance one step further.

So, what does Identity First Language mean? Put the person before the disability or condition, (I stole the following from thearc.com) “…and describes what a person has, not who a person is. Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the opportunity to define him/herself.”

Example:

Person with Autism vs. Autistic Person

On the surface, theses statements may seem the same, but the real delineator is the first one suggests a separation of the disorder from the person. But can you separate a person from the disorder? There are so many times, I wonder if I am seeing autism or my son just being a crabby teenager. Or is his autism causing typical teenage stuff to be even more heightened? I can’t completely take Autism out of the equation, but I don’t want it to define him either. Yet, how can I separate him from his own traits that likely come from the disorder? Do you see the dilemma? This is the debate in a nutshell.

So, as you can imagine, this is truly a personal preference for how to refer to someone. And that preference can range wildly even between a parent and a child. I could delve much deeper into this hot topic, but for today, I’ll leave it here. I wanted to introduce the concept to you and hope you do more reading on it. If nothing else, at least, be aware there are individuals who prefer to be addressed differently and you should ask what their preference is: person with autism or autistic person? A real expert on People First Language is Kathie Snow. You can read her one page explanation here regarding all disabilities: Kathie Small

Summing up, I haven’t approached this yet with my son, as we don’t really talk with him about being a Person who has Autism. I have asked if he knows what Autism is and he says yes, but that is usually his response to most things. When I asked specifically for him to define it – he could not. I don’t blame him; it’s a quagmire of a definition. So, for now, I don’t push him, but I do wonder what his preference will be someday: Autistic Person or Person with Autism?

Like this:

One Response to Homework

These are really interesting and thoughtful posts, LeeAndra. Thank you for sharing them. As service providers for people living with ASD, we think a lot about management, inclusion, and what “success” means to individuals and their families. But I always greatly appreciate the insight we gain directly from people with autism and their friends and families on topics like identity and acceptance. These are things we would all benefit from thinking about more often.

LeeAndra Chergey

Purpose of this blog…

This blog contains snippets from my memoir "Make A Wish For Me".
Start at the bottom, if this is your first visit with the first installment and work your way back up. After the segments where I "blog the book" you will find anecdotes and stories about our continual journey. Please subscribe below and leave comments as you can.